does it ever end?
I'm so sorry you're having such a hard time, Zach is only 8 yrs old but has severe autism, and we're already very concerned about him getting bigger. I mostly wanted to say that it is very common to have problems with the generic version of anti-seizure meds, more so than other meds. Can you get the dr to write a new rx specifically stating no substitutions? You have my utmost respect having to do all this on your own, I'm exhausted most days and I don't have to work outside the home, and of course I have my dh to hand Zach off to when I'm exhausted. Best wishes. Lately I have been asking the same thing. You are not alone, I am so tired. You need a break, I have no advise just wanted to let you know we are here for you. Praying for better days ahead.
I am sorry for this post, but I am in such need to vent. Justin is again in meltdown mode. Two so far today, and I have a headache,exhausted and plain sick of it. He seems to be having more since his seizure med was changed to genric, I know I sound crazy..but can the genric be different than the name brand he has been on for many years? He is also dealing with a new DVD player that he is not even trying to learn..the buttons are not in any different place than his old one he broke. I am dead tired of these god awful meltdowns..one last week was so bad he "shredded " the skin off his knuckle on one of his fingers. He had to go to the doctors where he has a special cream for his finger... He is scheduled for a scope of his insides in two weeks...I miss the time when he was younger, it was so much eaisier than, there were no meds and not a whole lot of meltdowns... I have lost my job, been applying all over, but no one wants an old broken down lady. Sorry I am having a little pity party here I guess...I try to look or find the positive, but man I can find it hard right now. Anyway thanks for reading this..oh we were also in a car accident about 2-3 weeks agon, wrong way driver and now he cannot deal with alot of cars around us when we are driving...go and figure..I guess it is time for another shot I dont know how most of the parents on this board get through their days...we have bad days too but I cant even compare to most on board. I just wanted to tell you that your entitled to everything you are feeling and I understand getting into the "giving mode" till it is the only one that is familiar anymore. It is hard to break away for yourself but try...I try to go to thrift stores or talk to my mom, sisters..need to do more~like run 5 miles everyday would do me good but too dog tired to even walk around the block. I was a nurse and now my dd is in school I have no clue what to do..I have no confidence to go into nursing again and hate even thinking if the school called and I wasnt home. I need a change bad just like you. I think ABA is great for behaviors and if you could get help from a therapists it would be a big help. They basically ignore the inappropriate behaviors completely..I am talking cold, poker face no reactons/looking/talking whatsoever and pouring on the praise for catching him doing good things. Soon the aggressive behaviors and tantrums lesson and soon disappear. I dont know about seizures so hopefully others can give advice in this area who know better..I do know some generic drugs do act different because of the inactive ingredients... Best of luck! First of all, (((Hugs)))). I totally understand. I get up each day and want to crawl back into bed. I just sit here and say, "Okay, God, what will it be today". Financial pressure has hit on top of it since, the severity of 3 kids in the school system is so bad, and with my own PTSD issue, working outside the home here is almost impossible. I had a business back home but it is hard to get that type here. Taylor's meltdowns are violent. SHe bangs her own head on anything and everything, has unbelievable strength--I have bruises on areas of my body I didn't know existed. Most of the time, she can be fine but, like with respite cancelling cuz of personal problems for 3 days, she is off and takes it out on everyone. Her twin brother is usually the brunt of it. She wants her way or no way and, if all 5 kids are home at once, she can't deal with not having her own tv, her own computer, her own space and just goes nuts. Even the safe room isn't "safe" any more. I am just stepping over everything she threw on the floor in here, in awe that one little kid can do so much damage--I will need rubber walls soon. I love my children to death--but some days, I just wish I could get up and say, "Oh, this is gonna be fun". If it isn't the school system complaining that my son is wearing "clothes that aren't the best" (he tends to want to wear comfy clothes and, even if I throw them out, he digs them out of the garbage), or "Taylor isnt dressed or fit enough for what she goes to school with"--I just want to crawl in a hole most days and not ever come up. Taylor remembers everything too. She was in a minor accident with my respite provider and it took weeks to get her back into the car. Please know it's okay to vent cuz, all of us here truly do understand. We all care. God Bless, Kelly
Gee, just when I was starting to feel sorry for myself having school drop-off problems with two on the spectrum... I'm sorry to hear you're struggling. Maybe one thing you can do is invest in a simple universal remote (buy extras of the same model) so that if there's a change in machines, the user interface will be the same. I've also used nail polish to make the play/stop/etc symbols more visible on the machines. Electronic equipment is made to be so stylish -- black on black or silver on silver -- not user friendly with easily visible buttons. I have no experience with seizure meds, but maybe generics aren't as easy on the stomach? Since he has other gastric issues, maybe the change in meds is causing some sort of flare-up. It's good that he's getting scoped soon -- hope they find some answers. I wish you could get some much-deserved respite. I hope that things get better for you soon.
Hi vcuddy, I just wanted to share I really understand the burn-out that you feel. Some days are better, I guess to prop me up for the bad days. My son has a very foul vocabulary that he never hesitates to use, we are working with the ABA people to stop this lovely attribute-who knows how long that will take. But truth is we are all only human, we have our limits and can take only so much. I really hope by now that things have settled down for you some. Also, the generic meds can be different, so let the dr. know. If not being generic, maybe the blood level has gotten a little low and he needs a dose adjustment-do you think that this could also explain the increase in his behavior? Seizure meds do have that calming effect. vcuddy.... Here's one for ya! Yesterday while at a local city carnival, my 21 yr old son peed himself while we were inside a huge business fair tent! And 21 yr olds don't pee just a tiny little puddle either! And he was peeing on asphalt, not grass so it was flooding everywhere! OMG I was horrified
Dayby Day, it is good to know I am not the only one out there who wants to go away all by myself and is just so very tired of this life Autism has decided to give me. I joke that I have no life, my life is my son...but it is true! I have no life.I feel so guilty if I get something for me,(although with no job that is not happening)..so I usually will for go something I need or want (make up maybe) and get something I know my son would enjoy. My son...what do I say...I love him tp pieces and want no one to hurt him and people who are around him to help him, actually do their job and help him...But my brain is so full of autsim and him, that sometimes, like now..I scream for the shear weight of it all. I yell for help..but there isn't any and I am lacking alot of motivation lately to do anything. So thank you DaybyDay..and all you other great parents... I started crying reading the posts because it is so true. There are definitely times when I am just like I can't do this anymore. I don't have family and my ex/husband (we were divorced right when son was diagnosed then remarried 5 years later) doesn't get it. When we are invited out, which is extremely rare, I feel like all eyes are on me and my son, we are outcasts. It doesn't matter how good he tries to be everyone is quick to criticize. My work is my only outlet, I was lucky to find work and able to work at home. But again, I am at home all day by myself so I am isolated all of the time now. I appreciate it because it does give me an outlet where I can just be "normal" and I am not sure what I would do if I did not have that. I go once a month to scrapbook. I went last night and it just hit me when I looked around, none of these people understand and they don't care to. We are alone in this. Dealing with Autism is an isolating process and I often wonder why this happened to me. I really try to push those feelings back but it is so hard. Hang in there, maybe tomorrow things will be better. (((Leslie))) I will admit, I have been overly self-pitying the past few weeks. I guess I have reached a point, after 6 years of being here that, I can't get why I can't connect. I never had a problem back home. I can talk the horse off of a meat wagon. I love to be sociable. My door is always open and I would do anything for anyone. I am not a saint (although the bible says we all are :) ) but, all of this has me self-analyzing in the area of, "what am I doing wrong?" Exclusion has been the hardest part. I thought, after leaving the strict, catholic state of Massachusetts, churches here were so laid back, seemed so friendly and caring, it would be different. I have found that not to be true either. Even they have excluded us in many ways, no matter where I go. Either I can't put money in that collection basket every week (and you can't help but notice the look on the guys face when you don't put anything in it), or I have been told by one that, our family is just too needy for what they can offer (I didn't realize caring needed a special funding). Also being on the poverty level has made me feel even more subordinate to everyone here. I always get harsh words like, "Well, with your talents, you certainly can work full time somewhere". Yes, I could. Of course, I have to have a job that has lots of sick time because, how many NT parents get calls, 3 times a day from the school, have their kid escape and get picked up by the cops, have 4 hours IEP meetings, and may never be able to leave their "perpetual toddlers" alone, no matter how old they are? I am honest when I go into a place that is hiring. I have the credentials and experience. Heck, I have 12 years of success in a home business to prove I can handle pressure and deadlines, as well as quality. When they ask about how many kids I have, I tell them 5. I don't care what anyone says, you are discriminated these days for having kids anyway--it means you will use sick days, unless you can afford a nanny. Two companies I went to offered good insurance plans, but would not take on a pre-existing condition. Autism is pre-existing and, working full time I would lose their benefits, and medicaid. So, I work full time just to get medical care? Never mind being honest and telling them you have kids with autism. I get the look of sympathy from the one hiring--the, "Oh, I don't know how you do it" routine. Then, I never hear from them again. So, right now I have no job, which is killing me. Our house is 3 months behind in mortgages, but man..I have plenty of diapers! My car payment is one month behind. I had to choose between that and food. I am blessed that I had a computer business back home because, we have computers that I had there, for myself and the girls that worked for me. Without this computer, I would have no one. I thought of working nights--but Taylor started roaming again and I can't do that either. Even if she can't get out, she can't be alone. I never know what she would get into and, I can't chance it. I can't even go to the store without a cell phone (also overdue) attached to me. I get 5 calls in the 45 minutes I am shopping for food cuz Taylor got up from bed and is acting out. If I bring her, I have to go through the tantrums because, she wants to help but also wants her OWN goodies in the cart and gets mad cuz I say, NO. (Gotta love those end of aisle displays with Chip's Ahoy). I want to run away some days. If I had money for the gas, I might just do it too. Maybe that is why God keeps me poor..lol Estranged hubby came here last night and slept on the couch. I have no clue why he wants visitation. He doesn't spend one moment with the kids, falls asleep in front of a tv, and today, all he is doing is sitting here, while kids are in school--some visitation. He should be out, working a part time job to make up for the money lost--I took care of the family when he was out of work and I had business back home--I just took on extra work and worked until the wee hours of the morning. Nope--that is beyond him. He would rather sit here and pretend like he is doing something. Whine Whine Whine. Anyway hon...I am in tears every time I come here..and sometimes good tears because, when I see someone describing their situation, I know it isn't "just me". Back to coffee before I have to vinegar, baking soda and vacuum up the downstairs--ah, the luxury life I lead. God Bless and Hugs, Kelly VCuddy, I took taylor to the pool a few weeks ago, before they closed. She had a meltdown because we had to go home for dinner. She started running over to the lockers and banging her head. I had all these parents staring and coming over, asking what was wrong with her. I said, "She is autistic and she is just mad". Then the manager came over and told me that, they don't mind us swimming there but, she could be a DANGER to everyone in the pool so, if it happened again, she wouldn't be allowed to come in (we pay here for pool membership in fancy OP, with 7 pools, all very nice--and I paid my dues) ever again. I said, "If you keep her out, then half of those kids over there, whacking other swimmers with the balls that they AREN'T allowed to have in the pools (pointing at the rules on the wall) have to go to". I cried all the way home. I want everyone to just come in and live our lives for just one day..and then make comments. God Bless, Kelly I think part of my problem is: a)I don't have anything else in my life besides autism & b)nobody really gives a sh*t when you get right down to it. Not the doctors, not the public, not the neighbors, not my family... no one really cares. I'm in this alone.I know exactly how you feel, Day, I truly do. It is me, and only me right now--autism keeps our home a private place. Our lives are ignored. The only time I hear anything is when someone doesn't think I am doing something right. I have no family--although I have heard them say they are family. However, if that is family, I pass. My friends are all back home and, really--are they friends? Where are they? When do they call? Does spam email constitute friendship? Only thing neighbors here care about is my grass and my kids being not up to standards. I wake up alone and go to bed alone. I spend my day alone. this is life. Some might think I have a bad attitude but, unless I velcro myself to someone and then duct tape myself so I they can't avoid me, I don't know what else to do. (((hugs)))) To you. You are not alone--we are here. I just wish we could all start a commune--Society Outcasts or something..lol...then, who cares about the rest of the world. We would all have each other and know that we are always going to have someone there that will listen, and truly understands. (((VC)))) you didnt get me down at all! I have had no one to talk to for so long that, I now find myself addicted to the board-just to know others are out there that know what it's like. My husband and I have weird relationship. No one gets it. I can't even get it--but I have to do what I feel is right for my kids. We are separated but he comes and goes as he pleases. I do this for 2 reasons: 1)He comes from massive money. He has left us before, a few times and goes to live with rich daddy, and doesn't have to do a thing, including find a place to live==lives there free, and 2) If I divorce, my kids are written out of the will. As selfish as it seems, I know Tom will never be able to take care of them if something happens to me, and I fear them being put into foster care. The money would not only put them through college, but will also ensure they get cared for completely. I would put every cent in a trust. I can't trust Tom to share it with his kids. He has hidden money from us for years--even when there was no food in the house. I have to do what I have to do. So, I stay separated, let him come and go when he wants to visit--but make him buy his own food! lol He was ordered to give me a 200.00 c/s--wow..5 kids, 50 bucks a piece, no food stamps and I have to buy diapers for 3. Yeah, that is big of him. He complains every time he has to hand it over. I lost my job too. I had one I loved and was so good about family coming first. I worked with severely challenged young adults in a facility down the street from my house. SSA said it wasn't approved and, if I stayed there, I would lose benefits--I made a crummy 600.00 a month WITH TAXES--I couldnt live on that and they were only a part time facility, with no benefits. I couldnt risk the kids losing their SSI and Medicaid--waivers in Kansas are hard to get for that. They have cut so many services here, it is ridiculous. So, I am doing everything by the book now. I have Vocational Rehab (that I had to hound to get me in, for over a month) appt tomorrow at 1:30. I have applied to several companies and one is working with challenged young adults. They will also pay for me to be trained for CNA, so..if VO-REHAB gets it approved, and helps me with things needed for the job, I can work and still get part benefits, but not lose all and not worry about medicaid (another job with no bennies either, and low pay). Once I am financially okay, I am going for legal separation. I know what it is like to go to bed alone, and get up alone. Even when tom does come by, he goes into a back room, instead of sitting with his kids or taking them out. He can't deal with the autism so he yells a lot, which then has me yelling at him. Then he leaves. I am a single parent with or without him so, I will legally separate so he can get a place where he can live and have set rules on visitation. I have no family either. There are days I really wish my mother was still alive and sometimes, am mad that others here have so much family--I get jealous, actually. My mother would have accepted my kids, any way they were. granted, she would have moved in here (she was a very dependent person) but, I would have had support. I hate being an only child--no sisters or brothers. I hate being without a mother and God knows whatever happened to the person that donated sperm for me to be conceived. UGH..now, which one of us is venting? lol My point is, you are not a lone and, when I read your posts, I can totally understand where you are coming from. We'll make it--somehow. You got me kid--PM me any time. I am always here to listen. God Bless, Kelly I do not know what I would do if I did not have this place to vent.I have no family to help, they do not accept my son, when we would go over for dinners he always ended up in a back room alone, never spoken to..he knew this was not good, I knew it was wrong..so I do not speak to my family..I also go to bed alone and wake up alone, and wish so much for someone to want to be with me. My ex hardly sees Justin, and I am always of late begging him for the child support..just like we were still married. I think losing my job was the last straw that broke my esteem down to the end. That was the place I could go to where Autism didn't exist like it does when I walk into my house.Now I cannot find anything, and of course the rejection is more blows to the esteem. I want to thank DaybyDay and Kelly4Jesus I feel my post may have gotten you down..I am sorry for that..I am glad you shared it made me aware again that I am not alone, cuz sometimes you forget there are " Hello Kelly4Jesus and LG777, I told you this post I started could be a downer again I am so sorry LG777 that youcried when you read the posts here..I am thinking they were tears of "Man Her Too" kind..the realization you are not alone. I sometimes think I am alone, and yes physically I am, I miss the family things and just having someone to look at and talk too... You know I also am into the WHat am I doing wrong? mode, because for the life of me I cannot understand why I cannot provide for my son..he needs new underwear badly and shorts, his room needs to be slightly padded around the T,V. so his head will not go thru the wall, my floor in the t.v. room needs to be fixed as all the holes he caused from drops are only covered by a plank of wood. As for food, there is none in this house at this minute, I am waiting for the mail in hopes the unemployment check comes...it will not take me long to go thru it, as we need everything.. So you see why I am wondering what I did wrong to cause me to have a life such as this.I tyr not to let it get to me when I hear of others who think nothing of buying whatever they want when they feel like it. Here I am ready to pounce on the mail man for being so late. I try to remeber one day at a time, even one minute at a time, and somtimes that helps.I wish there was someway we could all get together in some kind of group (physical sense) as I just think it would be great to put a face on these strong and courageous women. My son is still sleeping, because he was up pretty much all night, so I do not even know how this day will go until he is up.I am having trouble keeping my eyes open, so I think I will end here and try to get some kind of slleep. |
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. I quickly moved him between two business tables to hide what was happening. As usual, my boyfriend was YARDS away -- oblivious to what was going on! 
!!!! So I went headed for home, riding past my twin sister's street... noticing everyone was in her front yard taking pics of my niece in her homecoming dress. And I wanted to stop over but couldn't cause I was a crying wreck! So I went home & cried & contemplated leaving the state on Monday & saying to the local social workers "here ya go, he's all yours". I'm done. 
others"